Still on the Line

Neurology Now
December/January 2013
Volume 9(6)
p 16–19

Abstract

Glen and Kim Campbell's brave journey with Alzheimer's Disease.

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The music video for “Hey Little One” shows an older man strumming his guitar and singing a low, slow ballad. His voice has weathered with age, but we'd know it anywhere: it's the voice of “Wichita Lineman” and “Rhinestone Cowboy,” a voice that has won five Grammys, sold 45 million records, and blended country music with pop before it was cool. It's the voice of Glen Campbell. Hearing him tell his stories in song has always been a powerful experience—maybe more so now, because Campbell has Alzheimer's disease (AD).

NBC/NBCU Photo Bank/Getty Images

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In the video (for a track from Campbell's latest album, See You There), we also see Campbell's wife of more than 30 years, Kim. She holds her husband's hand as they look out at the ocean and the horizon together. It's a poignant reminder that AD changes the lives not only of those who have the illness, but also of those who love them.

A WIDESPREAD DISEASE

Campbell is one of 5 million Americans with AD, defined by the National Institutes of Health as “an irreversible, progressive brain disease that slowly destroys memory, thinking skills, and the ability to carry out simple tasks of daily living.” (See box, “Alzheimer's Disease: The Basics.”)

AD begins with memory loss because the disease “starts in brain areas important for memory, such as the hippocampus,” explains Janet Jankowiak, M.D., a geriatric neurologist and member of the American Academy of Neurology (AAN).

Although medications can ease symptoms for a period of time, AD is incurable. “We don't have a treatment that changes the course of this disease,” says Charles DeCarli, M.D., director of the Alzheimer's Disease Center at the University of California, Davis, and Fellow of the AAN.

Even though AD is so widespread, “people are afraid to talk about it,” says Kim. She and Campbell, who is 77, chose to go public with the diagnosis in 2011. “A disease is nothing to be ashamed of,” Kim explains. “If he repeated himself on stage or had difficulty in any way, we wanted the fans to know why,” Kim says.

THE GOODBYE TOUR

Once it became clear that Campbell wouldn't be able to perform much longer, it seemed important to bid a grateful farewell to the fans. “The Goodbye Tour” took Campbell across the world in 2012, with a backing band that featured his and Kim's three grown children, Cal, Shannon, and Ashley—all accomplished professional musicians.

“It was a great time,” says Kim of the tour. “You need to cherish each moment with your loved one while he's still present—while he still knows who you are. That's what that tour was for us—cherishing Glen as a father, a husband, and a musical mentor.”

“Glen has the most upbeat view of the world,” says James Keach, whose upcoming film explores Campbell's personal struggle with AD. “He has no self-pity.” Occasionally on tour, Campbell would forget the lyrics to a song while performing, and “the audiences would literally help him finish the song,” Keach recalls. “And if he wanted to play ‘Rhinestone Cowboy’ twice, nobody cared.”

FROM SHARECROPPER TO MUSIC STAR

Campbell's story began in Delight, AR, in 1936. The seventh of twelve children born to sharecropper parents, Campbell came from a humble but loving home where music was a major part of life. When he was a teenager, Campbell, who had been playing guitar since he was four years old, began performing professionally with his uncle's band in Albuquerque, NM. By the early 1960s, Campbell had moved to Los Angeles, where he quickly became one of the most in-demand session musicians in town, lending his virtuoso guitar skills to the recordings of everyone from Frank Sinatra to Nat King Cole, Merle Haggard, The Monkees, and Elvis.

After a few years of working as a solo artist, Campbell reached superstardom in the late 1960s, with hits including “Gentle On My Mind” and “Wichita Lineman,” a haunting portrait of loneliness and love. He also garnered a slew of Grammys (“By the Time I Get to Phoenix” was 1969's Album of the Year) and in 1969, he sold more albums than The Beatles. Campbell's biggest-ever hit was released in 1975: the infectious “Rhinestone Cowboy,” which has gone on to be sung by everyone from Cher to Radiohead.

GENTLE ON HIS MIND Left to right: Campbell with son Cal; wife, Kim; and daughter Ashley at 2012 CMT Music Awards; performing with Ashley in Austin, TX, also in 2012.

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Soon afterwards, however, Campbell found himself battling the demons that all too often accompany fame and fortune. “From 1976 to 1980, the drugs and alcohol took over,” Campbell has said. The thrice-married Campbell had been spiraling further out of control until he met Kim. “It was our faith in God that brought us through,” she says. The couple married in 1982. Throughout the '80s and '90s, Campbell continued to record, perform, and maintain sobriety. But then, Kim explains, “he began to get panic attacks. He lapsed back into drinking. At Betty Ford, they noticed he had cognitive issues.” Then, at the Mayo Clinic in Scottsdale, AZ, Campbell was diagnosed with mild cognitive impairment (MCI). “Our doctors said that MCI doesn't always develop into AD,” says Kim, “but in his case, it did.”

The Campbells have become passionate advocates in the fight to raise AD awareness and research funding. Glen and Kim's daughter Ashley testified tearfully before Congress in 2013, imploring them to allocate more funds for the disease. “A person's life is comprised of memories,” she argued, “and that's exactly what this disease takes away from you.”

It's All Goodes

Glen Campbell is one of a handful of prominent figures going public with a diagnosis of AD; another is his friend Mel Goodes. “I have a lot of fun telling people I've got AD,” says Goodes with a hearty laugh. It's not the kind of thing one frequently hears a titan of industry admit: Goodes, 78, is former CEO of Warner-Lambert, the company that brought the world the cholesterol-lowering statin Lipitor (the best-selling drug in history). “Everybody's got something, and I have AD,” Goodes says. “I don't say ‘Woe is me.’ I look at everything as positively as I can.”

There is, says Mel's wife Nancy Goodes, “a terrible stigma associated with AD,” which is why they first kept the diagnosis (received about four years ago) private. But then, Nancy recalls, “I said to Mel, ‘There's nothing to be ashamed about. You're still you.’ So we started to tell everybody.” Now, says Nancy—who is a philanthropist and former fashion industry executive—people thank them. “Many prominent people have AD but aren't coming forward,” she says.

The Campbells and the Goodeses were introduced through filmmaker James Keach, who is making a documentary about Campbell's struggle with AD. They became fast friends, and soon organized an AD fundraiser together. “He's a wonderful guy,” says Mel of Glen Campbell, “and a great symbol for other people.” Goodes and Campbell also enjoy golfing together: “He's a damn good golfer—he beat the heck out of me!” Goodes says.

The Goodeses and the Campbells have also worked together to support The Alzheimer's Drug Discovery Foundation (ADDF; alzdiscovery.org ), an organization with one mission in mind: find a cure for AD. The Goodeses, who have donated generously to AD research and sit on the Board of Governors of ADDF alongside other notables such as retired Supreme Court Justice Sandra Day O'Connor, were honored with ADDF's 2012 Chairman's Award. “We'll do everything and anything for them,” Nancy says.

Mel and Nancy exercise regularly—often three hours a day. “I do sit-ups, bike riding, everything,” he says of his fitness routine. It's only natural for someone who used to begin every day running laps while singing Frank Sinatra's “High Hopes.” “When I found out that I had AD, I thought, ‘OK, I can live with this,’” explains Mel. “I'm going to do everything I can to stay as vibrant as I can.”

FIELD RESEARCH Mel and Nancy Goodes at a benefit for the Alzheimer's Drug Discovery Foundation. (Goodes: Patrick McMullan; Campbells (Left to right) Christopher Polk/Getty imagaes; Gary Miller/Getty imagaes)

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It's that strength that is seeing Mel Goodes through what may be his most important challenge yet. “People are dying who could live healthful lives,” says Goodes of the millions who will continue to get AD until a cure is found. “It's so important to not give up.”

CARING FOR THE CAREGIVER

Nowadays, says Kim, her husband “knows that he has AD, but he doesn't know what it is. I'll explain it to him—‘It means you start losing your memory.’ He'll say, ‘Oh well, I've got too much up there anyway!’” The Campbells, who make their home in Malibu, CA, “try to stay active and do fun things together,” says Kim. “Glen still enjoys meeting and talking to people.” Campbell also loves playing golf.

The activity is beneficial for Kim as well. “I have that little window of time to have lunch with a friend or take a ballet class.” The logistics of it all can be frustrating. “It's hard to leave the house,” she admits.

The reality of the disease means watching her husband become “more childlike,” Kim says. “I'm going from wife to more like a mother. I have to ask, ‘Did you brush your teeth?’”

One of the reasons AD is so difficult for caregivers, says Dr. DeCarli, is that “it's the living loss of a loved one. They are still there but drifting away.”

Many caregivers don't want to put their loved one in a nursing home, to which Dr. DeCarli says, “OK, fine. But that doesn't mean you can't take care of yourself also. Have somebody come over and stay at the house”—because caregivers “need time off. This is a marathon, not a sprint.”

The Campbells' faith also provides support.“Glen's got AD, but he still has a keen awareness of his relationship to God. One night he started saying the Lord's Prayer out loud; all of a sudden he stopped and got teary-eyed. ‘That really bothers me—I can't remember the words,’ he said. I finished out the prayer with him, and he said, ‘Make me say that every single day, because I do not want to forget.’”

Music also remains an important part of Campell's daily life. “When we were on tour, our doctors told us that it was probably keeping him from progressing as rapidly,” says Kim.

SEE YOU THERE

Although Campbell no longer performs publicly, fans can delight in his new critically acclaimed album, See You There (available at glencampbellmusic.com ). The album is “a new take on some of his classic hits,” says Kim, who was an executive producer on the album.

“Everywhere we go, everybody has a different story to tell about how Glen's music has affected them,” Kim says. “I'm in awe of the things he's gotten to do and the places he's been.” Even in the face of AD, Campbell's music still brings joy to countless people—himself included. “Here's a man who's go this disease that will ultimately take his life,” says Keach, “but he is celebrating his life, singing all the way.”

Alzheimer's Disease: The Basics

What is Alzheimer's disease (AD)? AD is defined by the National Institutes of Health as “an irreversible, progressive brain disease that slowly destroys memory, thinking skills, and the ability to carry out simple tasks of daily living.” In AD, cognitive function declines as brain cells malfunction and eventually die. The brains of people with AD contain plaques (made of the protein amyloid beta) and tangles (made of the protein tau) that seem to interfere with the normal functioning of the brain. However, scientists don't understand the exact role played by these plaques and tangles, which also sometimes appear in the brains of people without dementia.

How common is AD? More than 5 million Americans have AD.

What are the symptoms of AD?“Forgetfulness beyond what you would expect for normal aging,” says Janet Jankowiak, M.D., “things like forgetting appointments or recent events, or repeating stories from a few minutes ago.” Patients may have difficulty with “something they have always been able to do,” like managing a checkbook. “When AD gets more serious,” says Dr. Jankowiak, “patients may wander.”

What are the risk factors for developing AD? Advanced age is the number one risk factor. After the age of 65, the chance of developing AD doubles every five years. Also, “having a family history of AD doubles your lifetime likelihood of having the disease,” explains Charles DeCarli, M.D. However, although AD “is inherited, the strength of that inheritance is not absolutely clear,” he adds. Other important risk factors include cardiovascular disease, hypertension, diabetes, stroke, high cholesterol, and head injuries.

What treatments are available for AD? Currently, no cure for AD exists. However, two types of drugs (cholinesterase inhibitors for early and moderate stage AD and memantine for moderate to severe AD) can temporarily improve cognitive problems such as memory loss and confusion.

Can lifestyle factors make a difference with AD? Dr. Jankowiak advocates the Mediterranean diet, regular exercise, and not smoking, plus having “a sense of purpose—from a stimulating job, volunteering, or interacting with your community—as well as frequent social contacts.” Dr. DeCarli urges treating any other medical issues the person may have, such as hypertension. Finally, Dr. Jankowiak stresses the importance of long-term planning. Consider issues such as finances, transportation (a driving evaluation is “absolutely critical early on,” she says), and end-of-life wishes. For patients who will live outside the home, “try to place them in a facility that is multilevel,” suggests Dr. Jankowiak. Multilevel facilities have an initial independent living situation with prepared meals; then a level of more assisted care to help with household tasks and medication management; and finally nursing care.

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